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Hi, it’s Patrik Hutzel from “INTENSIVECAREHOTLINE.COM’’ where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from one of my clients and the question in the last episode was
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer the next questions from one my clients Natasha whose father passed away in the ICU. Natasha is eager to know exactly the cause of death of her father while he was a dying Patient the ICU.
The ICU team kept saying in their notes that my Dad is in a life-threatening condition but no one ever told me that!
You can check out the first 1:1 consulting session with Natasha here.
Patrik: The question is if you are sending a patient for CT, who’s already ventilated, who’s already in a coma who’s already on vasopressors/inotropes and multiple forms of life-support-
Natasha: He wasn’t in a coma. He wasn’t in a-
Patrik: He was in a natural coma. That’s fair enough. You want to minimize the times in a CT scanner because of the risks attached to it. You got to weigh up-
Natasha: He was not on vasopressors at that time.
Patrik: Sorry.
Natasha: He wasn’t on vasopressors/inotropes until later.
Patrik: Well that’s good information to have because then I can’t see why they couldn’t have done CT of his chest too. I mean if they are going for a CT and they’ve already minimized the risk because he’s not in an induced coma, he’s not on vasopressors/inotropes then I can’t see why they couldn’t have done a CT scan either. It would have probably taken ten minutes more. That I believe is worth taking the risk especially with what’s happened.
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Natasha: Yeah because on the day before he died they brought him down for the abdominal CT. I don’t understand why they didn’t do that. Even before when he was on a CPAP setting, they put him on a CPAP setting. He was still on the CPAP setting during this time. Why couldn’t they … They were telling me he was okay. God the stuff they wrote about me in there. I won’t even get to that right now because that’s a lie as well. They were telling me that I didn’t want to listen to the prognosis but they would never tell me any medical information. They just would … They literally whenever I tried to find medical information they wouldn’t give it to me. They would say that I ask too many questions. They just wanted social work and palliative care to give me emotional support. I just wanted to know specifically what was going on with my father and what were the available treatment options and why they were not giving him aggressive treatment.
Patrik: Absolutely. One other thing that I just had to mention I had a quick look on their website. There is nothing about their intensive care unit, nothing about their critically care unit.
Natasha: Nothing.
Patrik: What I said I had a call with a client last week. We were looking on the website of this hospital. I said to a degree you want to see some bragging rights. I’m not saying everything that’s on a website is accurate. You want to see some bragging rights about their achievements. There’s nothing.
Natasha: I’m telling you no. There is nothing because they have nothing.
Patrik: That’s right.
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Natasha: God it just … I can’t even describe to you how I felt when I was going through this. Let me move on to something else. The ileus and this is common sense. This is common sense. You mentioned it. The internet mentions it, my sister the doctor when I told her about how they were doing abdominal x-rays and how they think he might have a bowel obstruction are they going to have … Who’s the GI person, general surgeon. Are they going to come? They’re probably going to have one maybe the next day or whatever. I’m waiting and waiting. I had told you when he was in the CCU they were like we’re just going to do compressions to suction that stuff out, we’re going to wait it out. I’m just, “What?” I’m thinking this is life threatening, right?
Patrik: Yeah.
Natasha: People die from C. Diff. and so listen to this now I didn’t … Let me tell you. I didn’t get a GI consult. It wasn’t until I … The day before my dad died is when after I raised hell and I finally got a GI consult. That day is when the doctor, the clinical care doctor she actually recommended that my dad see a general surgeon. When I asked her why do you think he needs a general surgeon she’s like, “You’re going to have to talk to a general surgeon about that.” When I asked my sister she said it could be that they want to do a surgery on his colon or something. Clinical care doctor wouldn’t tell me anything. She sent the GI doctor. Let’s first go to … I’ll tell you what the GI doctor wrote in her notes. Hers were even evasive. Just listen. When my dad was in … When he was in the emergency room the first day on the 31st, April 1st I forget which day they wrote the notes. I think it was … Because it was overnight; it was in those wee morning hours. The ileus was dubbed as acute no, on April 1st. The GI evaluation it was put in an order, right?
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Patrik: Mm-hmm (affirmative).
Natasha: Okay?
Patrik: Yeah.
Natasha: Like I said when I kept asking doctors then nurses for GI evaluation that day, during the day of April 1st they say it was unnecessary decompression. It’s not a big deal. The day before dad died GI doctor came after I raised hell. Then what happened was when I read the GI doctor’s report from April 7th she said that … She wrote down that my father didn’t have a bowel movement for a few days. Then the critical care doctor had written that his stomach was distended and to order a CT scan stat and that’s why he had it done April 7th. They thought that the grand negative bacterium was from his stomach. Then in her notes she wrote down that the daughter wants a fecal transplant and blah, blah, blah and that she’s worried about his abdomen. It was so incongruent. Then she wrote down how it may be mega colon. She was trying to make it seem like I was needlessly worrying about my dad’s abdomen. Then she was suggesting that he see a general surgeon to me in person.
Do you understand … Do you get what I’m trying to say?
Patrik: Yeah.
Natasha: She’s writing all these different things but then she’s trying to make it seem like I’m weird and worrying about something that I shouldn’t be worried about. Then she’s ordered a CT scan stat and telling me that the grand negative bacteria is from his gut and we should be worried. Then she’s making it seem like I’m overly crazy about his gut after she tells me he needs a general surgeon. That can only mean something with his colon needs to be operated on. That’s deadly. Do you get what I’m trying to say?
Patrik: I’m following. It’s very … What often happens in hospitals as well or in ICU I guess the documentation is often also around trying to cover their backs. You’ve got to keep that in mind too. I’m not saying that this is first and foremost intention of people. It should be a follow through report of the history really if anything but you’ve got to keep in mind for some people it’s just really also, they might be thinking along the lines of, “What do I need to write that in case a family is taking action against me so that I’ve got my back covered.” Some people might think that. That’s where some of that documentation may be coming from.
Natasha: Why not do things properly and help a person?
Patrik: Yes absolutely. The problem that I can see and probably also to the-
Natasha: Patrik, let me tell you something. She would not help me with anything. These doctors were not, really won’t help. I had basic questions. I was begging them to tell me.
Patrik: The problem is in ICU and also depending on the hospital, your dad just like many other patients was a number. You as the family member you are a number and you are a difficult number because you’re asking questions. ‘We don’t answer questions; we don’t have time for that. You don’t understand anyway.’ That’s what they’re thinking. That is what they are thinking. They think to themselves I have studied medicine for God knows how long. I’m the one practicing here. What does this person know? That’s how they’re thinking. On top of that there’s the time pressure. You know they don’t have time and they are all worried that if they start explaining things to you just like the discussion that we’re having we’re basically opening a can of worms. Aren’t we? I mean we’re looking at things in detail because we’ve established that this is what’s happened. Well why have they done this, why haven’t they done this.
They know that if they answer your questions that you will be coming back with counter questions. Well if that’s the case why are you not doing this? The unfortunate thing is patients are numbers. Families are just … They’re numbers.
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Natasha: This is the thing. What I noticed is that the thing is that when they write stuff on their notes and they don’t follow through, like the GI eval and then I saw the attending physician in “Oh, possible if we can’t weed him off the ventilator then tracheostomy to me. We could do that. No one ever talked to me about that but I was thinking in my mind I would like my dad to be on a tracheostomy. When are they going to talk to me? There was no family meeting with the physician, no family meeting. They put that in there for the fifth day. No time was there any real structured family meeting where all the doctors should have come together and explained. In detail, you’re supposed to have at least a half hour conversation where that’s when you sit down and you explain the treatment options and what you’re going to be doing. It happened in the other hospitals. They did that.
They sat down with us. With the whole team. They explained in detail. It wasn’t this difficult process. We’re going to do this, this and this. These are your options and that’s it.
Patrik: Even if they’ve done that, if they had done that the problem with family meetings, is the I’ve got numerous blog posts about family meetings. The problem in family meetings is they know what to say, they know how to say, they know when to say it and they know what not to say. It’s all about positioning. Again even if they’re giving you half of the truth in a family meeting, it’s still not the whole truth. Because you don’t have that preparation to prepare yourself for what they’re going to tell you and then ask the counter questions. They just present it to you and you’re like, this is what we’re doing and this is the only option. Maybe we have the second option but that’s it. But that may often be a third or even a fourth option that the families don’t even get to see.
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Natasha: Then I could have told my sister coz she’s asking what type of hospital this is. My sister and I we’ve had disagreements with whether or not my father should live. This is why I did not want her in the picture. She’s been working lately and she lives in Manhattan which isn’t that far but she has a family. I wanted to just also have peace with my dad. I would have told her and she would have come down there. What’s really interesting is that one of the doctors, this woman she’s young. She was 35 years old. She was the one that was just being such a bitch. She’s like, “Let me just talk to your sister.” It’s only one phone call. This is the day when my dad died. I go, “I am here. I’m the medical decision maker. You can tell me. Why do you need to talk to my sister? It was just so irrelevant.”
She’s like I’ve had senior doctors in your position and … I’m like no it’s irrelevant you have to tell me what’s going on. I don’t understand what your problem … She just was beating around the bush. I just didn’t understand. Why could she not tell me what the general surgeon would do to my dad, it doesn’t make sense why?
Patrik: Did she know that your sister was a doctor? Is that why she wanted to talk to her?
Natasha: Yes.
Patrik: Let me explain this to you, the reason I’m asking this. It’s funny.
Natasha: This is very basic though why couldn’t choose just tell me.
Patrik: Okay I tell you what I believe is happening there on a sort of psychology level. In my consultancy practice when families hire me and I speak to doctors. They almost … I identify myself as an ICU nurse and what not but initially they think, he’s a ICU nurse, he will get it because the families don’t get it. The reality is as soon as they tell me what they think the families don’t get I ask that. I say why are you not explaining this to them and they don’t expect that. You know what I’m saying?
Natasha: Yeah.
Patrik: They just think that whatever they are saying is the law sort of thing. That doctor might have thought yeah, I’ll talk to her sister she’s a doctor she will understand.
Natasha: These are very simple things I asked her. They’re trying to tell me that … They kept saying in the notes that they told me that my father has a life-threatening condition, he’s near-death. No one ever told me that. No one ever told me that dad is nearing dead, she didn’t even tell me that my dad was going to septic shock until literally the end of the day. No one ever told me my dad was near death until the day before he died. You’re saying that but that doesn’t make sense because, for example when I asked her questions, in the notes she said that I refuse to listen to her at this time. But that’s not the truth because I kept asking her questions and she wouldn’t give me answers. She would say … Listen, when I asked her about I was about can you tell me about his infectious disease, I want to know more. I want you to tell me what would the general surgeon tell me, why do you think he needs a general surgeon consult tell me.
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Natasha: She’s like you’re going to have to talk to a general surgeon about that, you’re going to have to talk to the infectious disease doctor about that. That’s not my job, I only deal with the ventilator and his lungs. The ventilator and his lungs and the COPD, that all it’s not my job. She literally told me that. I go, “What are you talking about? You’re the clinical care doctor you’re the one who runs the show.” She’s like no the attending does, you’re supposed to ask the attending these questions. No the attending runs the show. I go, no they don’t. I go, “My father has been in two other ICUs, the critical care doctor is the one that coordinates everything. He was the one in charge. He was the one.” The residence on his team they’re the ones that would get the information from the neurologist, the infectious disease doctor, the cardiologist and everybody else and they would relay it to me in a way that I can understand and that’s your job.
I go you’re the one who’s in charge. Then I told her I’ve never heard of this and then I raised hell and I really started screaming and I went down to patient relations and patient relations has like, “She really told you that it’s not her job to tell you these things?” I go yeah. They’re like did anybody hear her say that I go there was only one nurse but that nurse doesn’t like me. She’s like it is her job.
Patrik: Absolutely.
Natasha: What?
Patrik: Of course it’s her job. Of course it is.
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Natasha: She literally said those things to me she said it’s not her job and I should call the doctors myself and she said my job is just the ventilator and his lungs and the COPD you have to call the infectious disease doctor by myself. That’s what I’m saying something as basic as that, that’s really inappropriate.
Patrik: Yeah it’s very inappropriate but here’s the thing, and I’m not-
Natasha: Have you ever seen that?
Patrik: Absolutely and here’s the thing of what I think is happening on a deep level here. A lot of doctors and nurses who work in this environment they haven’t faced their own mortality. That’s number one. Even though they are exposed to death and dying all the time they still haven’t faced their own mortality so the questions that you brought up a very confrontational from her perspective and I’m not saying that they are but she felt threatened by that. She felt threatened by your questions.
Natasha: They’re just questions about my dad.
Patrik: Yeah I understand that but you’ve got to really look into the psychology of what’s happening there and the psychology is that a lot of … Especially the younger doctors and nurses they haven’t faced their own mortality and their exposed to death and dying all the time and they’re overwhelmed and I’m not trying to make excuses here for them. I’m just telling you what I believe is happening on deep psychological basis.
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Natasha: Psychological basis.
Patrik: They haven’t face their own mortality. Now they’ve got the stressed family member at the bedside who wants to know about this, this and this. Even though some of the doctors and the nurses haven’t faced their own mortality they know that his patient is probably dying. They know that but they have found no avenue to talk to you about this. They haven’t because they’re not mature enough to have to sit down with you, just want you wanted to sit down with you. Now, if somebody had come to you like … Your dad died on the 8th of April. If somebody had come to you on the 5th of April, somebody who is mature, who has experience, who can relate to people on an emotional level and have said to you hey Natasha we need to sit down and we need to work out what the options are for your dad. They would have laid out all the options but they would have also said look we could go down that path but we think it’s probably not going to help your dad.
If somebody had explained to you what we’re debriefing now in a mature way you probably would have taken that in but that hasn’t happened.
“Thank you very much for being a part of the previous series of 1:1 consulting and advocacy sessions. We hope you will find these new upcoming episodes informative and empowering.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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